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Diagnosis Process - ASD, Parents How do you feel?

Jess7

Hello, My brother was Diagnosed with Aspergers Syndrome (and numerous other diagnosis') when he was 6/7 and ever since then, I have had a keen interest in the diagnosis of ASD and how it effects families. I left school with 5 A-levels and decided to study Special Needs and Inclusion Studies at University. I'm currently preparing to carry out research in how professionals deal with parents and how parents feel? whether parents have been blamed in any way? My parents were blamed for not buying my brother properly fitted shoes and being overprotective and not taking him for regular eye tests Undecided 

[A request for information and a personal email address has been removed from this post. Information on research requests can be found here:  http://www.autism.org.uk/about-autism/research/requests-for-research-and-participation.aspx

Community Rules

3. Do not include personal information or ask others for personal information in messages. This includes names, addresses, emails or phone numbers. This is to protect your privacy.]

Moderator Bob

  • Hi Jess,

     

    I am currently going through the process of getting my two boys assessed for ASD.  They are both very young - 2 and 3 - so getting the Health Visitors/GP's on our side and to take what our concerns were was difficult.  The wait times to be seen is somewhat ridiculous, too - we started the process last year, and have now only just been seen by a developmental Paediatrician, and will have to wait another few months (up to 6 months) to be seen by a panel to determine the way forward.

    I do understand that, as my sons are very young, the doctors are reluctant to label them as autistic (they could change dramatically quite quickly).  The thing that I don't understand is why support can't be put in place first before assigning a label; while I am sitting here waiting for my next appointment, my son is not getting help with his talking and social play. 

    As the process goes on, I will continue to update you so that you know what my experiences are. 

    Kx

  • Hi dinkycd,

    I've edited your post because we don't allow people to post personal information on the community. It's number 3 in the rules: community.autism.org.uk/rules. I hope you understand.

    Thanks,

    philippab - mod

  • Hi jess I would be happy to help you,

    [posted edited to remove personal information by philippab - mod]

  • Well I have a huge post in the parent & carers section of the forum, I think the title says it all really "disgusting attitude of medical professionals'. I'm in the process of making a formal complaint about every single mental health 'professional' I've had to deal with.

  • Thank you for your replies, everything is helpful. How do you feel communication between the professionals is? How have professionals been with your children? Have the professionals been consistent over time?

    I have to say it is nice and refreshing to see positivity :)

    Anymore experiences are greatly encouraged and appreciated.

    Thank you :)

  • My 3 yr old son has only just been diagnosed (less than 3 weeks ago) and so far i haven't experienced any negativity, although I expect i will most like have to deal with some at some point.

    Everyone involved with us has been really good, very supportive and helpful.

    The paediatrican prepared me for the diagnosis before it was official, but it still didn't hit home until he got the label (official diagnosis). Of course everything seemed so much harder then, constantly researching ASD and related problems, overloading ourrselves with information until we can't take anymore and then realising that this is a forever thing, he won't just snap out of it and be 'a normal kid' one day and instead we need adjust our way of doing things to meet his needs and help him progress. 

    Its easy to get swept away in our own felings and emotions, but at the end of the day, we still have a happy and healthy little boy, he just needs that extra bit of love and patience.

    So to sum it all up, the professionals involved have been everything we'd expect so far, but the shock of the diagnosis its self is quite a bit to deal with.

  • hi Jessica - it's a long time ago now so I don't know how relevant my experience is because it was in the later 1980s.  His total lack of speech kicked things off, so he went to speech therapy.  A speech therapist said he wasn't an ordinary little boy.  From there he went into a full diagnostic process but I can't remember whether autism was mentioned from the start - I don't think it was.  It took about 9 months for the diagnosis.  I remember all the professionals in a positive way.  He was finally officially diagnosed by a paediatrican. He of course mentioned autism.   I asked him if he had any info I cd take home.  He didn't but found a leaflet from a school for children with autism + gave me that.  That was all he had.  Nobody blamed me.  Some professionals discussed with me whether to say he had autism of autistic tendencies. The "tendencies" was meant to take the edge off it somewhat, I think.  I asked them if he had autism + they sd he had, so I said then we can do without the "tendencies".  In the 80s few people had a pc, so it was off to the library for info.  There were 2 books there.  1 was about the now discredited holding technique.  The other was treating autism via psychoanalysis.  After reading these 2 books I thought my son's autism had been caused by me because that's what the books said.  That's what I told anyone who asked.  The word "autism" wasn't as well known as it is now.  Later on I found the nas + that made a big difference.